I am 36 years old. I've just had surgery to remove a tumor on the side/bottom of my tongue, and three lymph nodes in the same side of my neck. It's a few days yet until I see the cancer team for details on staging and beginning radiation and chemo.

The surgery has left me with no eating complaints other than my tongue doesn't reach very far at this point (they tell me to expect that to change), and I'm unable to lick the outside of my teeth, or roll the side with the incision... this means I prefer to chew as little as possible since food escapes the range of my tongue easily. I'm eating foods like oatmeal, soups, etc. Small pieces that can go down without chewing. And I capture the pieces that stray through swishing with water. I don't have a lot of pain now, 10 days after surgery, except a little with acidy fruits (which they also tell me will improve). [Tangent: Bananas kill worse than anything, even oranges, which I find strange.]

I was curious whether everyone winds up with a PEG feeding tube during treatment? Have any of you ever heard of someone who was able to manage the pain, nausea, and taste issues and swallow enough nutrition normally while they were receiving radiation and chemo, with my kind of cancer? Again, side/bottom of external tongue, and 3 lymph nodes in neck. I lost a very modest amount of tongue, it looks almost the same size as before. And again, I'm only 36.

Hi, Ben,You have come to the right place for answers. There are a number of folks on this site who have gotten by without a PEG, and I am sure you will hear from them. I had one put in, and was glad to have it, even though I was equally glad to get rid of it. As you go through radiation, you will have more problems with your mouth and eating will become more difficult. If you have chemo, as well, it will be very important to stay nourished, and that is very hard to do. I had a lot less problems after my surgery with eating, than I did after radiation. Listen to your docs and weigh all of your options. Glad you found us, but sorry you had to.

Ben, welcome to our little band. You've come to the right place for information and support.

I can't speak to the tongue issue. In my case I just had the neck dissection prior to RT and elected not to get a PEG. My RO told me that she thought if I was diligent that I could get through it. Which I did, although it was extremely difficult and if I had it to do over again would assuredly go with a PEG.

As anyone here will tell you, we all respond differently to treatment. So the fact that I developed large and extremely painful mouth lesions starting at about week 2 of RT and continuing until well after it ended is something that you very well might not have to deal with, or at any event not to that degree of severity.

I lost 30 pounds and was never, even with viscous lidocaine, able to get as much liquid nutrition in per day as was advised. I would recommend you think a lot about this and talk to as many people as you can - both in person and here on the board. There are folks who went without a PEG and don't regret the decision. They'll offer a balanced perspective to mine.

For me getting the stuff past the sores in my mouth was really the only issue. The 3 months of continual nausea actually didn't kick in until after the end of RT. And again, that was my own personal reaction.

Either way, best of luck with your treatment. I'm sure you'll do very well, and am glad to read that your tongue resection left you in such good shape.

Have any of you ever heard of someone who was able to manage the pain, nausea, and taste issues and swallow enough nutrition normally while they were receiving radiation and chemo, with my kind of cancer? Again, side/bottom of external tongue, and 3 lymph nodes in neck.

But that was the first time with no surgery. Since you can still swallow after the surgery, if it's important to you, you could do it. Especially since you are so young. But your nutrition will soon be all liquid, like Ensure plus. The issue of PEGs used to be hot one (and I was one of the hotheads) because when I joined, there seemed to be a party line that you needed one and should have one. Now there is a balanced viewpoint, acknowledging that many doctors oppose feeding tubes and their patients don't get one. It probably helped that Michael Douglas refused to get one and did just fine. For me, a feeding tube meant the cancer was winning, so I resisted. For others, it was just a practical option. Most of us (myself included) followed our doctors' advice and predilections.Nobody wanted one as far as I know, although many, (myself included after the surgery when the cancer came back) ended up needing one.Congratulations on being able to swallowCharm

I don't like the description of living with a PEG, but mostly I am physically and emotionally disgusted by the idea of getting a PEG. I don't know if I understand and could explain why I feel like I desperately don't want it. I will do it anyway if and when I find I am unable to swallow proper nutrition, but I want to try to get by without a PEG.

Is that possible? What's the procedure of getting a PEG like? How much risk will I be taking by saying no to the PEG until after I've cried "uncle"? Can they just pop one in the day after I say I can't swallow my nutrition and I need the PEG?

Ben;I actually requested a PEG following my mandibulectomy. I, like you am able to swallow liquids and am not even using my PEG except for medications that I'd rather not taste. The reason that I wanted it was to have a "plan B" for nutrition. Proper and adequate nutrition is very important when one's body is trying to heal and/or, endure chemo or other treatment. The actual procedure of inserting a PEG tube is really very benign. It is usually done under an IV anesthetic of some sort and takes a very short amout of time. While you are in a state of unawareness, the surgeon sticks an endoscope down your mouth into your stomach and points it at the front. In a darkened room, the light can be seen from the outside. This is where the incision is made. Then, the Tube is merely passed into your mouth, and pulled out the hole. There is a small, flexible "mushroom" on the inside that keeps it from coming out all the way and a little rubber keeper that keeps it from sliding back in. Aside from a little tenderness around the site for a couple of days, I felt fine after the surgery. The tube is not noticible. I ususally just tie it in a loose knot to take up the slack so it doesn't hang out from under my shirt. No one notices it. I simply flush it twice daily and that's the only time I really deal with it. When you don't need it any more removal is also quick and done during a regular office visit.Personally, I wanted it in place in case my ability to eat does become more comprimised. Going in for any kind of procedure when you're weight is already in free-fall definitely adds complications and requires you to play "catch-up".As others have stated, its a personal choice. I, admittedly, tend toward being a medical maximalist while others lean more towards the minimalist side of the spectrum. For me, PEG tubes have such a low risk and could possibly provide a real nutritional safety net that it was a no-brainer.

Ben,I had 3 surgeries on my tongue (if you count the biopsy as one & I do because they were all painful), a neck dissection, radiation and chemo, and I thought eating food during radiation/chemo was the least painful of all. I was fortunate to have very few mouth sores, don't know why except I did what they said with the baking soda, was careful not aggravate any sores I did get with food. So I had a big stash of VHC Carnation and Boost, and did not use any until the last week & still I ate solid food. I probably should have used the supplements during therapy just to make sure I was getting everything I needed in hindsight, but I hardly lost any weight.I had my worst time in the 10 days (and it was just 10) following treatment, then I used pain meds for the first time, except for post surgery, and I could eat almost nothing in the way of solids.

I did not particularly want what I perceived as the hassle of a PEG, but I certainly would have gotten one if I could not eat.

The odds? I sure don't know the answer to that one. I think I, like Charm, also regarded bypassing the PEG as a way for me to control my treatment. (BTW, Charm, you brightened my day with Sir Lancelot's song--c'est moi! It's the music in me.)

This topic has been discussed many times and sometimes even hotly debated. Very simply put, the peg tube is a tool. It will make things much easier when it gets rough to swallow. Of course everyone is different, some sail right thru and others struggle.

There are all kinds of pros and cons to go along with the choice of getting the feeding tube. I have always thought it is so much better to have it and not need it than to need it and have to wait to get one. When a person is dehydrated and malnourished they feel horrible. I really thought I was going to die I felt so bad. If this happens to you and you need an emergency peg tube, it could be a couple days before you get one. Why put yourself thru this suffering? Not one person who got one really wanted to have it (maybe except for Richard).

If you choose to go without one and need one later you may be able to get away with the nasal tube. That is a more temporary solution. It seems to be most the guys who try to go it without the tube but then end up in trouble and end up getting one anyway. It honestly isnt that big a deal. It just makes it a little easier to handle keeping up with your nutrition and hydration.

Actually Christine, the real allure of the PEG tube, for me are the parlor tricks. If you're pouring anything in, don't start laughing. It will squirt all over the room unless you're really quick on pinching it off. Also, its possible to really cut back on the quality of one's wine selection since you totally bypass the whole tastebud issue. I've never been much of a drinker but I'm glad to save every penny I can wherever possible. Also, when its removed and the site heals, you can convince your son's friends that you were actually born with two bellybuttons. Actually, three in my case since this is my second one. There's always a silver lining.

Hi here and welcome! Everyone here has their own opinion of pegs - I was told to get one and did - I was told to try it out and test it for when I needed it later - I did and got severely nauseated after the first try. They switched my formula, I tried again, and threw that up, and pretty much gave up. I had the tube for my entire treatment and never used it beyond the two attempts. Like Anne I was very blessed in that I had some mouth sores but for the most part I had no real pain until the last two days of treatment then I took my meds and chugged my ensure. It definitely helps maintain the swallowing reflex if you go the whole way through. So it can be done. It is good to have it just in case because at some point food sucks!!! And unless you're super motivated or have someone pushing you... Eating becomes highly uncomfortable. so the tube can be a reprieve. I too had similar surgery - and had one node involved I found semi solid foods for more controllable than mashed potatoes. did they reconstruct you? Hey removed a third of my tongue but I have amazing mobility with it. Good luck! You can do this!!!

Hi Ben,I just finished up 30x IMRT on Dec 27, following a partial left glossectomy and a neck dissection. I told the doctors that I wanted to push through this without a PEG and they happily let me. Some days were tough, but if you remain tough and look at the water and shakes as medicine, you can do it. I was lucky not to need chemo, which I'm sure made my journey a bit easier. I am a month out of treatment, still have a few sores, tongue mobility is poor but steadily improving. Just yesterday I was thrilled to find enjoy some scrambled eggs and cheese and a strawberry milkshake with taste and all. You will muscle through this and be on the other side of treatment before you know it!!Sally

Richard, now thats funny! Ive had some odd encounters with my tube as well. Its leaked so it looked like I wet myself. Its stuck out in the grocery store and amazed young children.

Sally, you are very fortunate! Most of us got 35 radiation treatments. Let me tell you that last week was the worst one! That week is where the going gets tough. Congrats on your great recovery!

Cheryl is one of the lucky ones who got thru this relatively easy. Not that any of us have it that easy. All OC patients go thru some hardships.

Ben, I hope you are able to make an informed decision with all the responses. For me I tried to say NO but my nurse convinced me to get one and I needed it. I felt it was the one thing in my treatment that I had control over. Choose wisely, it is a very important decision.

Hi Richard. When we met with John's RO he is the first one of the doctors who brought up the PEG. We knew nothing about any of this going into it. John in the beginning absolutely refused it said he wouldn't need it. His RO told him he only had two patients make it completely through treatments without one. He STRONGLY advised John to get one saying that once the treatments got started he did not want them to stop so he could have a PEG placed. He told us that the body fights a lot harder when it is properly nourished and hydrated. John reluctantly agreed and got one two weeks before treatments started. He didn't start using it until around week three of treatments. Even with it in he lost 30 lbs. He managed to avoid being hospitalized during treatments for dehydration. He continued to swallow liquids every day so he never lost that ability. He had the PEG removed 2 1/2 months after treatments were over. Let's face it no one is "comfortable" with one or wants to get one. We looked at it as just another tool to fight this cancer. Good luck!

Hi Ben,Kevin was not fond of the PEG idea either, but his doc was also pretty insistent. He had it put in, very easy procedure, but only used it a few times. It grossed him out so he forced Ensure down. He would do a lidocaine rinse and a shot of Lortab, then drink. It still hurt though. He ended up losing about 54 lbs. He had it to lose though, so he was lucky. That is something to consider also. We are now a little over 3 months out from last tx and he is eating almost everything...except bananas burn like crazy!! They are the only thing that REALLY hurt now. He even ate steak tonight for the first time. He tried about a month out but choked a bit so red meat has been avoided since then. Tonight went well.Something he did during the chemo was to take a probiotic. He had so much pain in his colon from the chemo I just didn't know what to do. The doc just kept giving him stronger and stronger pain meds which constipated him horribly and just made him a wreck. I got him Activia to try for a few days. The pain got better and things got back to normal. So with the next round of chemo we got Align. The doc said it was ok and he breezed through it. Well, not breezed, but compared to the first round it was way better.Good luck with everything. We look forward to hearing from you as you proceed. You are NOT alone. I wish we had found this site prior to beginning tx. It was a LONELY 6-8 weeks.Blessings,Kathy

I didn't use a PEG but switched to a completely liquid diet by the end of the third week. It was difficult to swallow near the end and I definitely used my pain meds quite a bit so I could get my shakes down. My RO doesnt routinely give patients PEGs but different doctors vary on what they recommend. I think a PEG can be really helpful and keeping up your nutrition during and after treatment is very important. I wish you the best of luck whatever you decide to do.

I also had oral tongue cancer, and am happy to say I was able to go through treatment without getting the PEG tube. I lost over half of my tongue during surgery, had reconstruction, and finished my treatment on 1/13/12. I will say, however, it was very difficult to eat during treatment, and continues to be a challenge. By week 2, my ulcers were very bad and I switched to a mainly liquid diet (ensure plus). During treatment, I managed to keep my weight stable, and only lost about 4 lbs. my main motive to stay off the feeding tube was that I didn't want to have swallowing difficulty after, so I tried very hard to maintain my nutrition and hydration. Unfortunately, it was not easy, and still challenging to eat! I am still getting ulcers, but have begun to eat solid food, and hope the ulcers will end soon. It gets better though, and it is definitely possible. Good luck!

I have tonsil cancer and lymphnode involvement on both sides of my neck. I had 2 surgeries and 2 rounds of radiation in 8 months. I did not get a PEG tube. I have horrible mouth ulcers, chronic thrush and I can't eat fruit because of the acid and most other foods I eat based on texture. Most of my taste is gone. Meat tastes somewhat like metal. I have a loss of appetite and alot of weight loss but I chose not to get a PEG tube because I felt like I lost control over another aspect of my life. I just powered through it. I have 3 treatments left of my radiation. I did not have chemo. I think it is a choice and as long as you can eat something and not loose a dangerous amount of weight I would not do it but I tend to be a maryter when comes to pain.

I have a PEG tube and rarely use it. I had no choice due to issues with my teeth (non cancer related). I found I can eat noodles with some sauce, pudding, Ice Cream and yogurt. I have not gone through a full week of radiation or Chemo yet so it may change.

_________________________
squamous cell carcinomas Stage 2, 1/26/2012. Surgery 2/15/2012 - Finished Chemo 5/18/2012 Finishing Radiation 5/29/2012So make every minute count-Jump up, jump in and seize the day-And let's make sure that in every single possible way -Today is gonna to be a great day

Push yourself to eat everything now. Your sense of taste will eventually change and something that you once loved will taste very different. Make sure you eat alot too. Zero pounds lost is the doctors goal for patients. Most of us tried but still lost a considerable amount of weight. So if you are a thin or average sized person try your best to pack on some pounds. Hot chocolate with half and half and marshmallow creme along side a piece of cheesecake should do the trick

I did 6 weeks of radiation and chemo. I did not have a feeding tube put in. My doctors said if I lost 10% of my body weight, they would put one in. That would have been about 12.5 pounds. I lost 9 pounds. I was determined to keep my weight up. I drank Ensure, Carnation Instant Breakfast (which I still drink for breakfast),protein drinks etc. My husband made many trips to the grocery store trying to find things I would eat. He made lots of shakes and malts, adding fruit to them for nutrition. He would make meals for me and I would sit at the table trying to eat at least some of it. Sometimes it would take me awhile to get it down, but I did. I am glad I didn't have to have the feeding tube - just one more thing to deal with. I did everything the doctors told me to - using salt & soda rinses, head & neck exercises, another rinse for sores and dry mouth etc. Some of my taste came back about 6 weeks after radiation. I'm now two years out and can taste most things although some of it doesn't have as strong of flavor as before. Hang in there, it gets better.

I got the PEG before I started treatments for no other reason than I weighed 93 lbs...I had no weight to play with so both the radiologist and the Oncologist were all for it. I also thought I probably would be miserable enough without even a minor surgery if I waited. I'm now at the end of week three of rads, still swallowing fine, eating fine...food still tastes fine. I've "practiced" with my tube, just to get a feel for it, but I don't need it yet. If it ends up I never need it, great.....if it ends up that I do need it, it's already there for the using.

I had horrible cramps (just about as bad as labor pains) for 3 days after placement....having it put in wasn't as easy peasy as I was told it would be...

This is a late post, and a lengthy one too, but thought I'd add my comments in hopes it might add further insight into your dilemma.

When I was first diagnosed and the treatment plan decided, I set 2 goals; one: to make sure I received all 3 chemo treatments (having heard that many patients cannot handle te severity of cisplatin, and the thought of only getting 2 of 3 treatments scared me!), and two: not to get a feeding tube!

I don't know why I was so adamant - perhaps it was fear - but I was determined. It went really well for me right up to the last 5 radiation sessions, and with those and the 3rd chemo session right around the next corner, I was sure I was going to make it without having one installed.

And then I somehow lost 8 pounds in just a couple of days. It was the Thursday before labour day, and I was scheduled to book into the hospital on Monday night for chemo session #3 commencing Tuesday, just 4 days away. My RO and I had made a deal and shook hands on it a few weeks earlier whereby if my weight fell below a certain level, then I would have a feeding tube installed.

Now all of a sudden, I was 8 pounds under the minimum weight, and I remember so clearly her words when she said that it was my choice, however on Monday - 3 days later - if I had NOT regained those 8 pounds and was still below the minimal weight level, then she would cancel chemo session #3 just as sure as God made little green apples!

I went home and stewed about it. Already reduced to drinking my own milkshake concoctions due to the pain swallowing, I knew there wasn't much chance of regaining the lost weight, and it boiled down to which of my 2 goals was more important to me?

Luckily, I made the right decision and had the tube installed the following day. They kept me in the hospital and made sure I was heavy and healthy enough for the final chemo treatment.

She knew how important that 3rd treatment was to my mental preparedness, and knew exactly what button to push to gain my compliance.

So how did it all turn out? What nobody prepared me for was the discovery that the pain didn't didn't stop, or ease-up for that matter, even though the radiation treatment was over! In fact, the pain continued to build for the next month or so before showing any sign of abating whatsoever, and had I known that was going to happen, there would not have been any argument from me.

I must have jinxed the process along the way because of all people to become 100% feeding tube dependent for life, why did it have to be the guy who protested it so vehemently in the first place?

The combination of chemoradiation and surgery resulted in my ending up with extreme xerostomia (dry mouth) due to zero saliva gland function, severe trismus (lockjaw) with only a 13mm range of motion between my upper & lower jaw, and reduced epiglotis functionality which meant I could not swallow anything other than fluids.

Yes I could swallow soups and other liquid nutrition, but it would still require me to have a feeding tube in order to maintain sufficient daily caloric intake. That's an awful lot of soup to eat every day - gallons of the stuff - and how long would it be before even the thought of another spoonful of soup would turn me off eating altogether?

In view of having no saliva to fight food related bacteria and almost zero access to perform routine oral hygiene, I decided it was one of those "all or nothing" situations, and with great reluctance decided I would rather retain my dentition as long as I could, and forego any further oral feeding in order to minimize the pace of dental decay. That meant I must rely solely on my feeding tube.

That was 7 years ago, and I haven't swallowed a single morsel of food orally in all that time. Things went really well for me and my tube until only recently, relatively speaking.

Shortly after having it routinely replaced in January of this year (usually every 9 - 12 months it is replaced), I started to suffer bloating and nausea mid-way through a feeding, and it became a horrific event to complete a meal that took 2 hours to feed and another 2 hours to recover from.

Finally I returned to the hospital to check it out, and discovered that the tube had moved from my stomach into my duodedum which was the cause of the debilitating nausea. They replaced that tube and everything was just fine for about a month. Then it happened all over again, and the tube was replaced for the second time in as many months. A few weeks of normalcy, and then wham, the tube is replaced again!

Believe it or not, I went to bed one night and woke up 2 days later in the emergency ward suffering a very severe blood infection on top of the fourth bout of pneumonia since December 2011. One full week in hospital, a couple days at home, and I'm back a few days after that for yet another tube change.

At this point we are all frustrated and pretty well fed up with feeding tube drama, and I inadvertently learned from the Angio-Tech who was assisting the Radiologist that there was an alternate type of feeding tube apparatus that I could select if I was so inclined.

It is manufactured by Kimberley-Clark, and comes in 2 basic styles: one a similar looking external tube and connector/valve arrangement to what I was used to, or the other, a low profile unit about the diameter of a half-dollar.

Where these two units differ is internally - how they were kept in place. Instead of a foot or more of coiled tubing in your stomach, these new styles are retained by a small balloon that is inflated on the other side of the abdominal wall and that is what keeps them in place.

No more gauze, stat-lock fixation devices, or Tegaderm bandages in my future with any luck! The bonus is being able to take a shower without wrapping myself in five or six layers of saran-wrap, or being able to go swimming without worrying about seepage or any feeding tube consequences.

I understand they have been available for a few years already, and why I didn't learn of it earlier is a mystery to me. And so, here I currently sit wasting away until I receive my first "Mic-Key" low profile device and have it installed, hopefully within the next week or so.

Until then, I'll try to cope with the volumous sweating, bloating and nausea that accompanies each meal and consumes about 12 of the 24 hours I am alloted every day.

I think it is much wiser to simply get the thing installed just in case you find it necessary, as most patients do.

As Christine pointed out, the OP decided to get a PEG back in February, so I'm going to just stroll down memory lane with you. A foot of tube inside sounds like you have a combo G/J tube or a J tube instead of a plain old PEG? either way, G tube, or J tube or G/J tube, the low profile versions are definitely the way to go. Personally, I prefer the AMT over the Mic-key since the AMT are better designed and have shaped the balloon more like an apple so there is less leakage and granulation tissue.I was equally determined the first time around not to get a feeding tube. My RO and MO had the weight concerns but we could not agree on what the minimum weight was.( I was stubborn that my marathon fastest time weight of 126 lbs was fine but they kept using my 177 lbs at DX as the baseline so they drew the line at 140 after first trying for 157) I just said "we will see" and never shook on it. I created a firestorm here on OCF when I first joined by bragging about how I put lead weights into a vest and wore heavy combat boots both of which added about 14 pounds onto my weight. But I never had dehydration and was eating and drinking after TX faster than anyone. I was the most contentious of the PEG war combatants until posters stopped patronizing and ridiculing the decision not to get one. I went overboard however in my defense and ended up as bad as the Pegophiles.Today the discussion is fair and evenhanded. Oncology Management principles and most textbooks acknowledge that the doctors still are deeply divided on prophylactic PEG placement. You really made me laugh (and I need smiles right now) with your post - especially the part about "jinxing". I'm right with you now, it's been three and half years of total feeding tube and it's never getting better. Sorry to hear about your placement issues. With the button or low profile, I now have my wife change my tube and that works a lot better than the doctors ever did. It's sad that you were not told of this option earlier. We've had lots of discussions here on the low profile tubes. I'm a firm believer in them for us tubies. Keep the faithCharm

I made it through two radiation treatments without the PEG. Unfortunately, after the second reoccurrence and treatment, I was no longer able to eat solid foods; the tumor hat eaten two key nerves that help swallowing and such. I have paralysis or partial paralysis on the right side from my soft palet, tongue, down to my esophagus. When I swallow, about 5% of what goes down finds its way into my lungs.After that second round of treatments I was still eating fluids orally (no solids) until I came down with pneumonia. At that point I went in and asked for a PEG. I have been on one now for about 9 months.I read about the Button that Charm got and immediately got with me doctor to see if I could get one of those. She said sure, ordered one and had it in place during a brief office visit about a week later. I have had that in place now about 6 months and love it. I have a model made by Boston Scientific that has an ovate shaped balloon in the stomach. I have had no problems with it and can now enjoy the summer with thin shirts that do not bulge, hot tubs with the wife, and brief swims in the lake with my son.My doctor said the Kimberly Clark design is bit dated and likes the newer model by Boston Scientific. Ask your doctor for his/her view on the different options available.